Hi Dawn, it's so nice to know I'm not on my own with this, I too feel like my world has come crashing down and I don't have any control over it.  The only control I have is my hair, I'm having it shaved on the 2nd ready for chemo. My family is also lovingly surportive but they don't see me when I quietly brake down and cry and feel so alone,,i would love to be on this journey with you. 

Hi , thank you for replying ,  I have been considering what to do about my hair this morning , I think you are doing the right thing . I don't know about you but the second I wake up I think about it all and that's when I have a meltdown. I do get better as the day goes on but the knot in my stomach remains . I have always been physically and mentally strong but now feel weak and tormented. All of my hospital appointments have been positive but it wears off after a day and the panic sets in . My consultant told me once you start treatment you mentally become stronger ,  I hope so because I want to feel better than this . Good luck on the 3rd , let me know how it goes , I am having a marker put on on that day then should get a start date for the chemo soon after that.  Thanks again for replying . Keep in touch.

My markers are in I have 3, you don't feel it going in as they use anathesetic , for a few seconds I'm fine in a morning but then I'm up and keep myself busy it's took a while to get like that but it works, for a few weeks I thought of nothing else but started my walking again and really does help,, deep breaths Dawn,, we will both get there and kick it in the ***, will stay in touch for sure, stay safe best wishes wendyj 

Yep deep breaths and lots of them . I am having my treatment at xxx hospital no complaints so far , they have me a box of goodies from a charity called little lifts . May I ask if your going for a wig ? 

Hi Wendyej, I'm sorry to hear about your diagnosis and totally understand your anxiety about side effects. 

I was diagnosed in January with invasive ductal carcinoma,  ER, PR and HER2 positive. When first diagnosed and waiting for various results I was a was a bit of a wreck and full of anxiety. I decided I  could not carry on with that level of anxiety and needed to take some control. I cut out alcohol, made sure I was eating healthily and started walking 2 1/2 miles every day with hubby. Being in control changed my mindset completely and I felt much calmer. I completed 7 cycles of chemotherapy with minimal side effects, continuing my walking througout. I also started phego injections, due to being HER2 positive. Hubby now does these for me at home, after completing some training. I had a mastectomy with diep flap reconstruction and completed 15 sessions of radiotherapy on Christmas eve. I have zoledronic acid infusions every 6 months for the next 3 years and will be on letrazole tablets for 5 years. 

I wish you well on your journey moving forward, feel free to ask any questions, if you have any. Xx

Hi Wendyej

Hope all goes well for the 3rd, and it won't be as bad as you fear. Don't know if it's any solace but I was diagnosed in 2016- stage 3, mastectomy,  6 rounds of chemo, 18 of herceptin, and 10 years of Tamoxifen (Only a couple of years to go -Yay!) . It may not feel like it now but you can get through it.

Best wishes

Wow, that sounds like a long hall but so worth it in the end. I know it's going to be hard work but now I'm ready for it. Thankyou for your message.

Best wishes to you too 

Hi Wendy, 

I have stage 3 inflammatory breast cancer Her2 positive in the right breast.  I am on round 3 of chemo, the plan is 6 rounds and targeted treatment, radiotherapy, a full masectomy then a year of pills. My cancer has spread to lymph nodes. The prognosis for this type of cancer is bout 50% survival in 5 years according to what I have read, and this is the standard treatment,  There is an inflammatory breast cancer support group on Facebook with ladies that have been through it and going through it.

In terms of chemo for me so far I have personally not found it too bad.  I did not opt for a cold cap to help preserve hair as I was told there was 50% chance it would work and can give people migraines.  My chemo symtpoms tend to go in cycles, first few days ok, then bad chemo mouth, change in taste (although cheese and tomato taste good to me), smell of chemo, stomach cramps and diarrhea, nose bleeds, heart burn and acid reflux, and some general feeling unwell, this tends to last 4-5 days and coincides with having the immuno boosters at home.  I lost most of my hair after round 2 but it will grow back after chemo so for me I am not too bothered although it is not a great look.

On chemo session 2 I had anaphylatic shock, I felt chest pressure vey quickly, tinging in face and up my head, and I told the staff quickly and they responded quickly with anti-histamines which stopped it.

In terms of the chemo itself for me I was on a hospital ward with 5 other people they put a canula in you and drip it in, you can opt for a pic line or insert if you want so they can put it through that rather than canual everytime, but I prefer canula.  You are there for quite a few hours, they put in saline to flush through you, steriods, a targeted treatment injection in your thigh if you have it, and then the chemo bags.  I am usually there for 7 hours.  My advice is take water with you and some food, the hospital I am at are good at offering food and drink but I find the sandwiches on offer very dry, take books if you are reader or something to stop you getting bored.

My advice is everyone has different reactions and symptoms but keep a log and if anything is worrying you or doesn't feel right ask for medical help or support asap.  

For me the chemo is manageable if not mildly irritating but I gave up work and don't go out much, and I am careful that family and friend are aware and if I plan a visit they know to stay away if they have an illness not to compromise my immune system.  With inflammatory breast cancer there seems to be no other treatment options available which is annoying as I wanted HIFU sound therapy, T cell therapy, proton therapy, or a further CT scan/technology at the end to see if my breast can be spared and this is not an option as far as I am currently aware as I made enquiries at two other NHS hospitals that do HIFU and another form of treatment and it appears only available for prostrate cancer or organ cancers.  I am going to have a virtual appointment with a specialist IBC unit tomorrow to see if they offer anything else.

On the IBC support site on Facebook people who have gone through it seem to say they found the surgery easier than chemo but for me I am debating the surgery part, I have always liked my breasts, they are big and I am only 44, plus the options for reconstruction as far as I am told currently are removal of skin and tissue from other sites such as stomach which leaves scarring, inplants and liposuction are not an option.  Therefore, for me the surgery part worries me not just in terms of look but other elements of surgery and I am going to try to find info about people that opted out of surgery and what the options are if I do this but also I want to meet people who have had it get info on their experience and hopefully see some examples of reconstructive surgery, to help me decide and also if I do go through with it help me cope by visualising it before hand.

What I would say is the patient journey has not been great, I feel I have had little support, I had to press and chase for results and ask for some tests at the start e.g a CT scan, you have to contact people and ask for support people don't check in with you regularly, and it is really helpful to have someone that can take you to the hospital and back etc.  Where I am you also have to arrange for your own blood tests in between chemo.  I would also say check out what benefits you can access in terms of work if you work or other benefits eg statutory sick pay, ESA, medication prescription exemption from GP (which should last 5 years), exemption from the hospital for parking fees. PIP post surgery if you need it, carers allowance etc.

Anyway, I hope sharing my experience has been helpful but if you have any questions or need a support buddy let me know.

Kind regards, 

Rose 

High five xx on news years eve i took back control for just a moment and shaved my hair off...  i too have a diagnosis of hers positive .. treatment plan of 6 chemo ... surgery and maybe radiotherapy ....